Week Two

As Katie reaches three years old her mom has decided to go ahead and enroll her in a public pre-school.  Before Katie begins, Crystal meets with Katie’s education team to take an active part in developing Katie’s Individualized Education Program.  Katie’s team consists of her mainstream teacher, her special education teacher,, a speech therapist, an occupational therapist and a physical therapist.  Together they go over Katie’s current level of performance, annual goals, participation in mainstream classrooms, and participation in assessments and a tentative schedule of when and where all these things are happening.  They also explain that although Katie does not seem to need any learning assistive devices now, if in time they find she would benefit from a certain device it is the responsibility of the school to provide for it.

During Katie’s first year of pre-school her behavior becomes much more manageable with the help of the education team.  By the time she is four Katie starting to grasp the idea of potty training and making obvious attempts to use the bathroom. Later she begins being able to dress herself with very little help from Crystal.  Katie’s communication skills are also making drastic improvements. She is beginning to say more complex sentences with multiple words.  Most of Katie’s words are intelligible.

At age five Crystal begins preparing for Katie’s entrance into Kindergarten. She again sits down with Katie’s education team to come up with an updated IEP.  The professionals explain to her that at this point in Katie’s education, her goals will be very similar to other children her age. Most of the focus will be placed on growing social, communication and personal independence skills.  Her academics will be tailored for her in the special education classroom where she will get more individualized attention and work at a slower pace. 

Crystal is nervous but also very excited about Katie entering kindergarten.  Crystal has decided to take the time that Katie is in school to put towards getting her GED. She realizes that as much as Katie is going to be able to accomplish n her lifetime, she will most likely always need some form of someone caring for her and Crystal is going to do her best to give Katie what she needs. She plans on finding a vocational program after earing her GED, so that that can gain decent employment and move out of the volatile living situation she shares with her parents now.

One major concern Crystal is having about Katie, is that she is rapidly gaining weight.  She takes her to a nutritionist where she learns that people with Down syndrome are prone to obesity.  The nutritionist sets up a diet plan and encourages Crystal to get Katie involved in some sport or activity. She also makes sure they are clear that Katie’s diet has everything to do with maintaining a healthy weight and lifestyle, and nothing to do with appearance.

Crystal finds a recreational soccer club that said they would welcome Katie onto their team. Even with the kind invitation, Crystal is worried that other kids will get frustrated with or make fun of Katie. Katie is a very sweet sensitive little girl and Crystal is afraid they will hurt her.

Decision Point: Does Crystal take the risk and put Katie on the soccer team?

Questions:

1.     What athletic activities are available specifically for kids with disabilities like Katie’s?

2.     What programs or resources are available to help the kids on Katie’s soccer team better understand Katie’s disability?

3.     Sometimes healthy food is more expensive, what are some resources for providing affordable healthy meals to Katie?

Week One

Crystal is an eighteen-year-old country girl.  The town she lives in is small and the average income is below the national poverty level. Up until recently she attended the local public high school where she met her on and off again boyfriend, Eddie. Eddie is a seventeen-year-old high school drop out who, like his father, has a bad drinking problem. They learned she was pregnant when she took an at-home pregnancy test after realizing she was late.  Crystal’s home life has been riddled with domestic violence between her father and mother. For this reason she was terrified of telling her parents and attempted to keep the pregnancy a secret when she first found out.  By the time her mom caught on and took her to the doctor she was already sixteen weeks pregnant. 

At her first doctor’s appointment, the obstetrician emphasizes Crystal’s need to be healthy and take pre-natal vitamins. She also does an ultrasound to get an idea of the fetus’ due date and developmental status. During the ultrasound the Dr. noticed a couple of markers that could possibly indicate Down syndrome. At that point she gave Crystal a blood test to more accurately determine the possibility of Down. Concluding the visit, the Dr. gave Crystal resources to apply for Medicaid and other supports for young mothers.

A few days later, the OB got in touch with Katie to inform her of her blood test results and recommend doing an Amniocentesis to find out definitively whether or not Down syndrome is present.  Crystal agrees and returns to the office for the test. The results are conclusive that Crystal’s baby is positive for Down syndrome.

Although shocked and confused, Crystal is determined to do all she can for her soon to be daughter. She begins reading about early intervention practices and contacting local organizations to do some research. Unfortunately Eddie has proven to be undependable and not on the same page with her about getting their lives together before the birth of the baby. As a result, they are currently not in contact with each other.

Katie is born three weeks early weighing 5 lbs. 2 oz. She has the typical physical characteristics of Down syndrome: upward slanting eyes, low muscle tone and a crease across the palms of her hands. The karyotype test provides Crystal with a definite diagnosis of Trisomy 21, the most common type of Down syndrome.

Katie’s infancy is relatively smooth. Despite her low muscle tone she has been able to breastfeed well enough for her to get the necessary nutrition.  She has only had one minor ear infection which is good considering Down’s children are prone to infections, ear and respiratory problems. They have found she has no co-existing conditions such as heart defects.  After birth, Crystal signed up right away for early intervention services for Katie. She was determined to be fully eligible for physical therapy and other valuable services such as speech pathology.  Katie spent the beginning years of her life working hard to meet developmental milestones.  She sat up alone at nine months, which is at the very end of typical range.  She began crawling at 14 months compared to the typical 6-12 months of age.  She began pulling herself up at 20 months and at her second birthday (1.5 years past typical development but to the delight of Crystal) she began walking.  Katie was a very quiet baby but at she was able to say simple single word utterances by 18 months months.  By 30 months she was able to say two word phrases.  Slowly but surely Katie learns the skills that the other toddlers her age are learning such as self-feeding.

Although Katie’s skills are improving, Crystal is worried about her behavior. She seemed much calmer when she was two and three but it seems as though all of the sudden Katie is becoming unmanageable.  She is throwing major temper tantrums and does not listen to any type of instructions. She is having problems with her sleeping too. Katie experiences long periods of restlessness and sleeplessness.  Crystal is worried about sending Katie to a regular public inclusive school. She is debating trying to get Katie the funding she needs to go to a school for kids with similar disabilities. This may also mean having to relocate at a very young age, with few job prospects and being a single parent.

Decision Point: Does Crystal focus on getting her child into a special school or does she follow through with sending Katie to public school?

Questions:

1.     What are some financial solutions/help available if Katie needs to go to a specialized school?

2.     Outside of school what might be sources for getting Crystal and Katie help with managing Katie’s behavior?

3.     What are some possible influences on Katie’s misbehavior that have not been evaluated?